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Ketogenic Diet: Treating Children’s Seizures with Food

Ketogenic Diet: Treating Children’s Seizures with Food Ketogenic Diet: Treating Children’s Seizures with Food

​​​​​No one knows why the ketogenic diet―which was developed in the 1920's―works so well for seizure control, but it does. And these days, it's widely considered one of the hottest food fads in America.​

What is the ketogenic diet?

The ketogenic diet (also known as the "keto diet") is a high fat, low carbohydrate, and "just enough" protein for growth and maintenance diet. Typically, it follows a ratio of 3-4 grams of fat for every 1 gram of carbohydrate and protein. This means that about 90% of the calories come from fat, requiring those on the diet to eat mostly fatty foods such as butter and cream. Although it may sound terrible, there are many creative recipes that make this a tasty approach. What distinguishes the traditional ketogenic diet from the modified-Atkins diet is the rigorous attention to food intake and limitation on total calories.

When should a ketogenic diet be used for seizure control?

Some children with epilepsy can have disabling seizures―up to hundreds per day―which can severely limit their quality of life and prevent them from participating in school and social activities. Seizure control is the first step in helping kids with epilepsy achieve otherwise normal lives. When medication isn't working and/or the side effects from it are too much to bear, the ketogenic diet might be offered as a treatment option. In fact, the statistics show that it is often more effective than another, new medication, and frequently also improves alertness and behavior.

According to a 2008 consensus report from an international expert panel, the ketogenic diet "should be offered to a child after two anticonvulsants are used unsuccessfully." The diet must be started and maintained under close medical supervision of an experienced medical team—including a dietitian.

Ketogenic diet looks different for every child and depends on several factors:

  • The child's age and weight

  • How the child and family eat (kosher, halal, vegetarian, organic)

  • The child's diet prescription (the specific combination of fats, protein, and carbohydrates weighed out)

The diet may not work for everyone but is suitable for many different patients.

The ketogenic diet can be effective for all seizure types and epilepsy syndromes. Some of the specific disorders that often respond to the diet include infantile spasms, myoclonic-astatic epilepsy, Dravet syndrome, Doose syndrome, myoclonic-astatic epilepsy, Rett syndrome, migrational disorders, GLUT-1 deficiency and tuberous sclerosis complex.

Ketogenic Diet in the Treatment for Infantile Spasms

​ The American Academy of Neurology and the Child Neurology Society recommend adrenocorticotropic hormone (ACTH) as the first line of therapy for infantile spasms. The goals for this medication are to completely stop the infantile spasms and improve the abnormal EEG. In some cases, pediatric neurologists prescribe the seizure medication Sabril® (vigabatrin), especially for patients with tuberous sclerosis. Both drugs work well, but your child's doctor will talk with you about which medicine may be the better choice for your child.

If those medications do not work well, the ketogenic diet can be particularly helpful when used early in the course of the disorder. Using a formula-only ketogenic diet for infants and gastronomy-tube fed children has been shown to work better than medications over time.

Typically, children are started at a Level IV Epilepsy Center and monitored as in-patients by a ketogenic diet team that may include a pediatric neurologist, pediatric epileptologist, nurse practitioner, dietitian, nurse, and social worker.

How well does it work?

Although it does not work for every child, several studies have shown that the ketogenic diet does reduce or prevent seizures in many children whose seizures could not be controlled by medications or those who were unable to tolerate the side effects of their medications.

Over half of children who go on the diet have at least a 50% reduction in the number of their seizures. It can start to help after just one week, but more often it can take a few weeks up to several months to judge whether it will be effective. If the diet successfully controls seizures, it may be continued for several years under the supervision of the child's health care team. Many children on the ketogenic diet continue to take seizure medications but on average they require one less medication and often the dosage of remaining ones is lowered.

Does the ketogenic diet have any side effects?

The ketogenic diet may cause side effects in some children, including constipation, reflux, weight changes, and kidney stones (due to uric acid build-up in the blood). These problems can be minimized by staying hydrated and careful monitoring. Some families notice mood changes such as hyperactivity or irritability.

Many of the side effects can be reduced by adjustments to the diet or with additional medication.

If you are considering the ketogenic diet, ask your child's doctor to explain all possible side effects, what you should watch for and what action you should take for each one.

​Special Considerations for Families:

  • The ketogenic diet meal planning and preparation take time. This can fit into your family schedule, but it takes practice and gets easier as you adapt to the new routine. All food or formula needs to be weighed daily and each meal must be eaten in its entirety.

  • The diet is very restrictive, especially for a young child. It controls the type of food and the quantity of food. Some children may feel isolated at school, because they cannot eat "normal" food. Many are just unable or unwilling to follow it, but most find it a far better alternative than frequent seizures.

  • It can be adapted to all ethnic diets―as well as for children who are allergic to dairy products (although this can further limit already narrow food choices). The dietitian will be a great resource for you along the way and can help calculate the diet with foods your child likes.

  • There is a chance that, no matter how closely the diet is followed, it might not work for some children.

  • Children must be followed closely by a doctor as they follow the ketogenic diet. It is not something to try on your own.

Parent to Parent: Would you recommend this?

​ A 3 to 6-year follow-up study of 150 children with epilepsy on the ketogenic diet asked parents the question, "Would you recommend the diet to someone else?"

An overwhelming majority (90%) of parents said that they would. Even though the keto diet is extremely restrictive, time consuming, and requires rigid maintenance, most parents found the potential benefits outweighed its drawbacks. Many parents in the study were more concerned about the side effects of the medications―and were grateful for the opportunity to explore an alternative option. Further, 55% would consider trying the diet again.

Are there other special diets for seizures?

Yes. Other special diets include: modified-Atkins diet, low glycemic index treatment, and MCT ketogenic diet. These may be used instead of the ketogenic diet for some children. If you have questions or would like to explore these options, talk with your child's doctor.

Additional Information:

Last Updated
3/9/2020
Source
Children and Youth with Epilepsy Advisory Committee (Copyright © 2018 American Academy of Pediatrics)
The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.
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